Posts Tagged ‘Health’

Hi, it’s me! It occurs to me that we have very different ideas about how health care should be managed in our country. This is no doubt due to the fact that I have a chronic immune disorder (inherited, even! Shit, as my relatives, you too could some day get the same condition!) and you don’t. You haven’t had to actually engage with what passes for health care in this country, especially prior to the passage of the ACA in 2010 when it was a fearful nightmare.

Currently, my medication without insurance – the medication keeping me alive and typing these words – is $1500 a month. When the regime you support removes protections for pre-existing conditions and allows health insurance providers to hike up rates for people like me, and reduce Medicare spending, I wonder who will pay these costs if I lose my job and the health insurance program I have. Will you? Gosh, it sure would seem appropriate for you to do it, since you are so upset about the idea of the government regulating this industry the same way it regulates the safety of our food and water. Remember how bad things were before the government regulated those things? I hate to break this to you, but there is only one law of the absolute free market, and that’s short-term profit. If you like your vacation days, your work hours, your work safety, your roads, safety features in your cars, and countless other protections via regulation that have likely saved both your lives and the lives of your children a million times over, then you might find that you actually prefer regulation to complete anarchy. People are shitty. You know this because your base instincts are some of the shittiest out there. It’s why you believe in the worst in people and why you believe that “those people” should just die if they can’t pay for their drugs. Why help people like your own niece, sister, daughter? You know: people like me?

Thank you for supporting my impending death.

Thank you for supporting the dissolution of the safety net I have known was there since 2010. The net that said, “Hey, if you lose your job, or you decide to write full time, no health insurance company can deny you coverage. You’ll be able to live.” See, I’ve been there before. I’ve lost my job and lived on expired drugs and ran up credit card debt to try and save myself. I did that, and it was a reality I never, ever want to go back to. I feared it so much that when the election happened, despite having a great job, a great spouse, a great life, I wanted to fucking kill myself. I wanted to end it all right there, because I didn’t want to go back to those days, to that huge fear that was always tapping at my shoulder.

That’s how bad those days were for me.

Do you understand?

Do you have any fucking clue what it is, to live that way?

The truth is, you can’t afford my $1500 a month in meds. Neither can my parents (nor should they. I’m 37 years old, for fuck’s sake!). There are two ways to make healthcare even better in this country: further regulate health providers and insurance companies so that they can’t charge obscene rates for things we must have and which don’t cost them very much, and raise taxes on the 1% to ensure our country has more equal distribution of wealth.

That’s it. Easy!

But I known you don’t want that. You won’t support that. And neither will this regime.

So unemployment is death, for me. That’s exactly what they are planning to build. That’s exactly what you have supported, and I never want you to forget it.

Ever.

This is why I want you to fuck off. Fuck so far off your high fucking horse. Fuck off. I wish you the absolute worst of everything. A cancer upon your house. A long and lingering illness for which you need constant care, for ten, twenty, thirty years. I want you kicked out of a hospital because you can’t pay. I want you to feel the full brunt of exactly what you have voted for. I want you to experience your Ayn Randian future to the absolute fullest. I want you to reap what you have sown here. And, more importantly: I want you to understand that you chose this for yourself.

Because it’s not “those other people” you consigned to death and fear and anxiety, which would have been bad enough.

I’m pretty tired right now, which is a feeling shared by a lot of folks, I know. During the brief period when I thought the latest healthcare-gutting bill was dead, I was feeling positively upbeat, but the blinds closed again recently and I picked up a couple beers and went back to bed for awhile.

The last couple months, I’ve started doing this thing where I clench my jaw at night; even during the day, now. I can feel it tightening up with worry and grim determination, and I have to force myself to relax. I make OK money right now, but I’m one job loss away from being uninsurable soon, and that’s a weight I haven’t had to grapple under since 2010. Note that I didn’t really start jamming out work at speed until 2011. That means my entire professional novel career, I’ve had the ACA safety net to take my mind away from the horrors of 2007. I could say, over and over, that yeah, things may get bad, but I’d never have to go through THAT again.

Working under this weight has been really hard. I have a health insurance plan right now with a $5k deductible, which means I paid $1500 for meds last month. Under the new plan, I could be charged like $20,000 a year just in premiums. I could have a $50,000 deductible on top of that, even on an employer plan, because all those regulations that the ACA made to keep insurance companies honest are very likely to go away, because they want people like me to “pay their share.”

Newsflash, folks: the whole point of health insurance is to have it cover you in case something horrible happens.

Something horrible happened to me.

The rhetoric coming out of this bullshit regime is like saying that the house insurance you bought isn’t going to cover damage from a fire because you should pay your share. Ummm… like… that’s not how insurance works. It’s literally hedging one’s bets against disaster. My disaster happened already.

I am hunkered down and trying not to go all “worst case scenario” because the truth of what we end up with will likely be a middle ground, but when you live like I do, with an chronic illness that’s this expensive to manage, you have to think ahead. And that’s exhausting. At the very least, I have to stay employed at a traditional employer forever. Which, hey, fine. At worst, even making what I do at a traditional employer, I’ll have to cut back to bare essentials just to make ends meet. We already have medical debt from our last health insurance plan with a high deductible that we are paying off. We were super thrilled when we finally paid off my spouse’s cancer medical debt a couple years back. It’s like this revolving door that we’re on, always hustling, hustling, hustling, and never getting ahead.

To take a system that is already fucked and make it worse makes you the worst human beings imaginable. To have voted in people who lied to you boldly and baldly is equally unconscionable. The amount of money I’m paying in taxes, in premiums, in deductions, is more than a lot of people make, period. But I’m the one who should die? I’m the one who shouldn’t be covered, when literally the point of insurance is to cover catastrophic bullshit that happens to people?

It’s tough to do work outside what’s keeping you in meds and food when you’re this stressed out, too. I’m pretty proud of all the shit I’m getting done, honestly, even if stuff like The Broken Heavens is running late. It’s still moving, and let me tell you – that’s a fucking heroic act right now. And the short story every month? And the podcast? Patreon rewards? AMAZE. I am fucking AMAZED every fucking time I GET OUT OF BED in the fucking morning, these days.

But I am fucking tired. And when your own life is in the balance, you tend to get pretty annoyed with people and their petty bullshit. I’ve been working hard to stay as un-engaged from Twitter and other social platforms as possible, because you just want to dismiss people’s whiny bullshit with, “WE COULD ALL BE DEAD IN THE MORNING,” and that’s not helpful for anyone. Little things also make you want to go nuclear, even when it’s just clerical error stuff. Every little thing, from dishes in the sink to a snarky email, makes you want to BURN DOWN THE WORLD. I was DM’ing with another writer recently who was like, “Oh, you look so put together in public!” and I’m like… yeah. Yeah, well, I’m a pro, etc.

Let’s not pretend that it doesn’t wear at us, though, no matter our public faces or snarky podcasts and sly jokes or ALL CAPS. I deal with stress like this with raw humor, and yes, that includes the snarky podcasts and sly jokes and ALL CAPS. That’s how I cope, and I’m doing the best I can to cope in a way that helps other people cope, too.

So if you see me around the interwebs, or rambling through events (I’m GOH at a convention in Sweden in less than 2 weeks! Dear lord), and I seem to laugh a little too hysterically, this is what’s up. I don’t hate you, I’m not high. In truth, I am doing the very best I can to cope in what is a horrifying and literally deadly situation for me here. I am one job loss away from losing everything I’ve worked to build the last ten years, and living with that knowledge hurts.

I am an American pre-existing condition, and vulnerable to death by vote.

Oh, certainly, one gets a reputation in certain circles. Reputation can be great. Fewer people fuck with me. Folks know I’m not afraid to post about or call out bad behavior in person. That’s nice.

But for writers coming up behind me, seeing me writing three books a year while holding down a day job, getting nominated for awards, and having an increasing sales record can give folks false ideas about how one manages to have a career like this. We look at super star writers and we think it must all be easy for them (I certainly do), and that if it isn’t easy for us, that we’re doing something wrong (I always think I’m doing it wrong).

I’m here to tell you that it isn’t easy. Oh, sure, I wouldn’t want to be doing anything else. But let’s not pretend that I spend all day at the beach, type out 500 words a day, and spend the evening in the pub snarking at people on Twitter. Instead, I get up a little after 5 a.m., give my big dog with the torn ACLs his meds, take my first dog out while his meds kick in, come back to take him out (I now have to loop a blanket under his rear end to get him down the steps), feed him, make myself breakfast, check email and Twitter, review contracts, revise stories, and then drive to work at 8 a.m. I work until 5 p.m. writing blog posts (about 15 a week) and running reports for clients, come home, open up my whisky advent calendar for the day, watch a show with my spouse while we have dinner, and spend the evening reading or revising something. Saturdays are dedicated writing days, where I’m up at 7:30 a.m. and at the coffee shop between 9 and 10 a.m. I try to work until at least 2-3 p.m., sometimes longer if I’m on deadline. If on deadline, this is how I spend my Sundays, too.

The reality is that keeping up that level of constant work can wear on you. Sure, I’m not working in a coal mine; it’s not physical labor. But it requires a lot of brain work, discipline, and dedication. And the truth is that even though I know better, I’ve been spending the last four years at a high burn, waiting for the “big hit” book. I’ve been grinding hard, thinking that surely this book, this next book, will be the break-out book.

The reality is – as any old school World of Warcraft player will tell you – grinding for that long can be counter-productive. You stop enjoying the work, the game, in your quest to level up. That’s a terrible shame, because writing can be a super fun game. Worse, because writing is basically my life, it means grinding for your whole life, and you can’t sustain that level of grind for very long without something breaking. I wanted to be honest about this, and about what we sacrifice sometimes when we forget that we’re human, and fallible.

Note that – though I spoke about anxiety issues back in July – I waited quite a while to make a post about having to go on medication for it. I started meds in October, right before Empire Ascendant came out, but I still had one more book draft to complete before the end of the year, and I didn’t want to be open (beyond a few vague tweets) about this until I’d turned in that book (or a VERY rough draft of it). I’ve cautioned writers before in being too open about their physical or mental health when things are bad. I’ve heard from a lot of writers (including the late Jay Lake) about how people stopped offering them opportunities on the assumption that they were unable or would be unwilling to tackle them. I didn’t want people to count me out, but I had to wait until I knew I was already better before noting that, you know, back in July I was a fucking nut and yeah, no, it just kept getting worse. This summer was pretty bad. But I had so much work to do by year’s end that I didn’t want to share that with anyone. I’d also hazard a guess that I’d have missed out on some opportunities that came in later in the year if I’d have been too open about just how fucking crazy things were.

Your mileage may vary, but I’d heard of too many writers burned by this. I hedged my bets and wrote the Locus post back in October knowing it would go live in December after I was sane and functioning again.

Right before I headed into that appointment, I found myself drinking two bottles of whiskey in 6 days, which is pretty fucking extreme for me. Sure, I like whisky, but a bottle every month or two is about my speed. The anxiety had gotten so bad that I was self-medicating. And I knew, having watched a lot of family members headed down that route, where the end of that road lay if I didn’t get some help.

At any rate, the other good news about being on drugs is that it’s also alleviated my yearly seasonal depression, too, which means I’m way more productive here in December than I’ve ever been during any other December (barring time spent in South Africa, when the seasons were reversed, of course). Like many people, I feared that taking medication would actually make me feel medicated and fuzzy. Instead, I just feel… normal. I knew it was starting to work when I spontaneously started singing along to a song on the radio a few weeks into the regime. I have been so tightly bottled up that moments of joy had been utterly elusive. Every ounce of energy I had was just going into trying to keep up the bare minimum of acceptable sanity.

When I hit a health insurance snafu that I had to deal with a few weeks ago I just shrugged and told my spouse, “Well, I guess I’ll have to deal with it,” instead of freaking out and going upstairs to lie down and have a panic attack. You can’t deal with life when you’re having panic attacks, or trying hard not to have panic attacks. Now I can actually deal with life, instead of freaking out about it. And let me tell you: there’s a lot of shit in life that needs to be dealt with.

All this said, and as much as I want to encourage others to take care of themselves, it also struck me how much of a privilege mental health is. The reality is that even with insurance, the costs of monthly meds on top of the actual drugs I need to stay alive is not very cheap. If I’d done this ten years ago, it would have been seriously financially difficult. Not to mention getting the time off to go to appointments, and actually getting in to see a doctor (I had to wait three months! Fuck). I’ve harped on our broken healthcare industry before, but if we want to have a sane and compassionate society, we must have equal access to care for people no matter their financial situation, and that’s still not possible in this country. It’s no wonder so many with anxiety just pick up cheap liquor instead.

No matter where you’re at right now in the writing grind, I just want to return to this: we’re not all invincible here. We’re not perfect. A lot of us struggle with bullshit. Please don’t look out at the people you see in life who seem successful and think that you’re somehow broken because you struggle. There is a lot of bullshit going on behind the scenes that we don’t or can’t talk about. For every writer you see who says something publicly there are hundreds more who don’t. You take care of you.

In 2005, I was a robust 25-year-old living in Chicago and working as a project assistant for an architectural and engineering firm. In the fall of 2005, I started to lose weight.

This was a good thing, I figured. I worked out a lot. I ate right. It’s just that losing weight got… easier. It was nice. After so many years of working out relentlessly just to stay at a reasonable size, I didn’t have to think about my weight anymore. As the months passed, I started to experience other problems, though. I started to get recurring yeast infections, infections that could only be cured with prescription medications, not the usual over-the-counter stuff. My gums bled when I brushed my teeth. Not just a little blood, but bloody spitfuls of the stuff. I was thirsty all the time, to the point where I could barely survive a 45-minute plane ride to Indianapolis without having at least one tea or juice on hand. I honest to god thought I was going to die if I couldn’t have a large drink every hour. And when I got ingrown hairs, they would form huge pustules on my body that had to be lanced and drained. As the months passed, the symptoms got worse. My sinus infections dragged on and on. When I went to various urgent care doctors and explained that I was exhausted all the time and getting weird infections, they said I must just be stressed out. I was so tired, in fact, that I couldn’t get out of bed on time for work. I started to get confused, and had trouble concentrating. My boss had to call me in twice for making data entry errors that I hadn’t had problems with before. I dragged my ass into work an hour late sometimes. An hour late! But I was so exhausted and frazzled I didn’t care; nothing seemed to really matter except sleeping and drinking juice. I also become increasingly hungry in addition to thirsty. I had to eat an extra meal between breakfast and lunch. I was chowing down on burgers and ice cream for lunch… and continuing to lose weight.

I remember lying in the bathtub and rolling up into a sitting position and feeling the bones of my spine against the tub. It hurt. I didn’t have the usual padding there to protect me from the hard tub. It was like being inside someone else’s body. I had a “catastrophic” health insurance plan through my employer, so when I went to the doctor with these complaints, it was always to somewhere cheap like the 24 hour urgent care or Planned Parenthood. I had a $2500 deductible, so everything was out of pocket. I was 25 years old, making $40,000 a year living in Chicago; after rent and paying my student loans, it didn’t occur to me to spend a bunch of money on tests. I was 25! Surely there wasn’t anything wrong with me but stress. I never went to the same doctor, so there was nobody to connect the dots related to my various symptoms.

My body finally gave out one Friday after coming home from Indianapolis for another work-related trip. I stepped off the train and got myself a hot dog because I was so hungry. But it gave me such bad heartburn I had to stop eating it. I trundled home via the bus. I could barely walk up the three flights of stairs to my apartment. I was so goddamn tired. I came home and drank and drank and drank – water and juice and Gatorade. And I peed and peed and peed. It was all I could do to stumble from my bed to the bathroom. I had to grab hold of the couch for balance.

At some point, my roommate and girlfriend at the time found me standing in the bathroom. Just… standing there staring at the door. She brought me to the couch where I apparently went into convulsions and started vomiting. I blacked out and wasn’t fully conscious for 36-48 hours, when I woke up in the ICU and had a doctor patiently explain to me that I had type 1 diabetes, an immune disorder that usually shows up in children, which is why nobody thought to test me for it at 25. Sometime the year before, an immune response from my body backfired, and my immune system started killing the islet cells in my pancreas that produce insulin. I would no longer be able to survive without taking 4-5 shots of synthetic insulin a day and carefully measuring and monitoring everything I ate and all of my physical activity.

What they did not tell me was that having this immune disorder also meant that outside of an employer-sponsored health insurance plan, I was now forever uninsurable. And the medication it took to keep me alive was going to cost me $500-800 a month without insurance. The ICU trip alone was over $20,000, with thousands more in bills coming in for weeks and weeks after I got out of the hospital. Even after my $2500 deductible, I still owed an 20% of that cost. That was *with* insurance. I just laughed at these bills. Laughed and laughed.

Four months later, still recovering from my experience in the ICU and adapting to a life totally reliant on taking medication, I was laid off from my job. To retain the same health insurance plan I paid $60 for through my company was $800, paid for on my own. I had to cash out my 401(k) in order to pay for it, because unemployment was just $340 a week (rent alone was $550 a month). If I went just 60 days without some kind of insurance, my condition would be considered “pre-existing” and I would become uninsurable for 12-24 months *even through an employer sponsored plan.* So I had to find some way to pay for health insurance – health insurance which still didn’t even pay 100% for my drugs. So it was $800 a month for my premium PLUS another $300 a month for the only partially-covered drugs. This was just to stay alive. To keep my head above water.

I picked up temp jobs, and after getting through my 30 days with them, was able to sign up for some shitty insurance that technically covered me (so I wouldn’t fall between plans and get hit with the pre-existing thing), but didn’t pay for my medication, so I was still paying out of pocket for that while trying to pay rent. Credit cards became my friend. I had four of them. Eventually, this situation became unsustainable, and in March of 2007 I packed up all my shit and moved to Dayton, Ohio where I lived in a friend’s spare bedroom, rent-free, while trying to live on expired insulin and checking my blood sugar the minimum amount possible to save on the cost of the testing strips, which were $1 a piece and which I was supposed to be using 7-8 times a day.

Without the temp agency I’d been at before in Chicago, I found myself uninsured once again while trying to rack up the requisite number of temp hours I needed from my new temp agency to qualify for *their* shitty insurance which, once again, wouldn’t cover my medication anyway. So it didn’t make a difference to how much I was spending on drugs (most of my medication costs were going on a credit card at this point). But it did start the “pre-existing condition” clock running again. I only had 60 days to get insured again, but I wasn’t getting enough hours yet to qualify for the new temp agency plan.

I was sick, my medication was working sporadically, since it was expired, and my credit cards were rapidly getting maxed out. I was mostly unemployed and only not technically homeless because I had a friend with a spare bedroom. I just stopped looking at my credit card statements. Being in debt, I figured, was better than being dead. But I knew that if I didn’t get lucky at some point soon, I was going to end up dead.

I signed up with another temp company, but was still 60 days out from being able to use their insurance. I ended up twisting my ankle and had to go to the ER. The bill was $800. When I got it, I just looked at it and laughed. I never paid that bill. I had to go back to the ER again with an issue related to my IUD. That bill was $600. I laughed at that one too, and didn’t pay it.

I could pay those ER bills, or pay for the medication that kept me alive.

Easy choice.

My temp company had me working a temp assignment for three months at a local company. I finally went to the temp company and said, “Listen. I can’t pay for the medication that keeps me alive. Either these people need to hire me or I need to get a full-time position somewhere else.” I went to my employer and said the same.

The temp company and my employer got together and – bless their hearts – my employer bought out my contract from the temp agency. My salary was just $32,000, and I didn’t negotiate at all, because I got first-day health benefits. And the premiums were free. Yes, free – the company paid 100% of the premiums and there was no deductible. I immediately ordered new drugs – the drugs that kept me alive – and paid nothing for them.

That company saved my fucking life. My spouse sometimes wonders why I still do freelance work for them, and why I don’t charge them the rates I do everyone else.

It’s because they saved my fucking life.

But because they saved my fucking life, they also got me for a really good deal. At that point, things were so bad I would have worked for nothing. I would have just worked for the health insurance. Their insurance plan was so good, in fact, it was a common joke over there: “Hey, if you lay me off, I’ll work for free. Just let me keep my health insurance!”

But today, that shit is over.

Today, you don’t have to joke about working for a company for free, just to get the health insurance.

Today, you don’t have to juggle eight credit cards to get the medication you need to live.

Today, for the first time in the U.S., you can sign up for health insurance no matter how much money you make, no matter what your health condition. Even if you have cancer, or you had cancer, or you’ve got some shitty immune disorder like mine. You don’t have to go to bed on some shitty mattress in some friend’s basement hoping and praying that you’ll get some lucky break before your expired medication stops working. You don’t have to beg a company to hire you just for the health benefits.

Today you don’t have to pay $800 a month for bare minimum coverage, and cash out your 401(k) and live on expired medication. You don’t have to run up multiple credit cards with medical bills. You don’t have to cry when the bills from the ER come in.

You can go to healthcare.gov and find a health plan that works for you, with coverage starting in 2014. Can’t afford it? That’s OK. The government will subsidize plans for people who can’t pay for them. You don’t have to worry about being unemployed and homeless and dying of some treatable thing in an alley somewhere.

You don’t have to hope you’ll get lucky – hope that some friends will take you in, and an employer will show you mercy.

All you have to do is be a human being. And you’ll be treated like a human being.

I don’t wish my experience on anyone. It’s my fervent hope that nobody in the U.S., ever, has to live with the fear and terror I did during that year from 2006-2007 when my whole world imploded. I want people to forget what it’s like to live that way. I want them to think that this is the kind of story you’d only hear about in some shitty SF dystopia novel.

I don’t want it to be a story that anybody in the country ever has to live again.

UPDATE: 1/4/17. Sadly, this post is making the rounds again as the new Republican administration is planning to gut the ACA just three years after it both saved and transformed millions of lives for the better. Ask yourself now: is the pre-ACA world we lived in, detailed here, really the one we want to return to?

Most folks know that I’m a type 1 diabetic. The type I have is an immune disorder – my white blood cells decided to attack and eat the cells in my body that produce insulin. This means I’ll die without taking multiple daily shots of insulin. Blood sugar naturally goes up due to all sorts of things, including stress and circadian rhythms, but primarily, blood sugar rises when you eat. When I eat, I have to take insulin or my cells will effectively suffocate and starve, sending me into a coma, then death.

I’ve lived with this for the last seven years. Most people get it when they’re kids, but it’s been known to occur when folks are in their early 20s and in a few outlying cases, when folks are in their 40s. It’s a pain in the ass, quite literally sometimes, but you learn to live with it. The alternative is dying, so you kinda have to deal. If you’d have told me I’d be testing my blood sugar 8 times a day and jabbing myself with a needle 4-5 times a day full of synthetic drugs in order to live by the time I was 26, I’d have laughed at you. But them’s the breaks.

But having an immune disorder has its challenges. Depression over the disease being one of them. It’s not like I’ll ever get better. Unlike being a type 2, it’s not like losing 50 lbs and living on vegetables is going to effectively cure me, either. It doesn’t go away. There’s no “fighting” it. There’s no cure.

That can get to you.

I was in the grocery store the other day, listening to this guy oversharing with the woman giving out free samples, and it became clear in just a few minutes of eavesdropping that he was a diabetic. Most likely a type 2, but the end result is effectively the same.

“I sat down and ate a whole key lime pie yesterday,” he said. “You know, sometimes the urge to eat is just so overwhelming. I just couldn’t help myself. I went to bed, and the next thing I knew, I woke up in the hospital. I guess I’d gone into a coma because my blood sugar was so high. And they had to work hard to bring it back down. And the doctor had a come-to-Jesus conversation with me, and my wife was crying, and everyone was very upset. But I just had to eat this key lime pie.”

This is one of those “diabetics you always hear about.” The ones who drink to pass-out drunk without checking their blood sugar. The ones who don’t test their blood sugar because it’s inordinately expensive, or because they don’t understand the disease. Or, because… well, because being sick is depressing.

One of the results of being on medication like insulin is that sometimes you can take too much, and your blood sugar dips low, low, low, to levels you can’t even imagine. This triggers your body’s “I NEED TO EAT” response. You have not felt hunger until you have felt the hunger of a person with a blood sugar number of 35 (normal is 80-120). I am also a mostly-reformed binge eater, so I am sympathetic to this NEED TO EAT A WHOLE PIE.

But when you’re eating a whole pie without taking your medication, there’s a lot more going on there, and I’m sympathetic to that, too. You get tired sometimes. Sometimes you just want to eat a whole pie. Or drink more than three or four beers. Or eat a plate of cheese fries without consequences. You want to pretend you’re young and healthy and fearless and your choices have no immediate repercussions. I am like this about life a lot more these days. Some of this is just being in my 30’s, with responsibilities, as opposed to in my 20’s, when all I had were some student loans and a rent payment. It sucks to have to think things through. To muddle through possible consequences. To be an adult.

As we come out of the long dark slog that is December and into the rapidly lengthening days of January, I can’t help but look back and be amazed at what I got done in December. December is, traditionally, a horror show of a time of year for me. For most of my life, I’ve been useless from mid-November to early January. When I lived in Alaska, this time lengthened from about October to mid-January. I was able to push through this in Alaska primarily by sleeping this entire time. And the summers with their four hours of dusk and twenty hours of daylight more than made up for it.

But being a college student in Alaska whose sum total of responsibilities is showing up for class vs. a working writer with a mortgage are very different, and this December the sheer amount of work I took on meant that I simply didn’t have time to check out for a season.

Last month was a month of deadlines. I’m writing eight blog posts a month from November to February for a freelancing client, and I wrote and distributed ten press releases for another client last month on top of that. I also started teaching a copywriting class – also from November to February – and I was astonished to learn that it takes me something like 20-30 hours a week just to prepare for classes.

The day I spent 12 hours sitting in front of my computer, preparing a PowerPoint presentation for a class, and then another five hours the next day working on class notes, I realized the brain fog was winning. I started to worry about hitting my deadlines. I started to dread them. I had a short story due for an anthology on the 31st of December, and was seriously considering backing out because it was just going to be impossible for me to make that deadline on top of all the others. Because in addition to all of this work, I also had a 40 hour a week day job, and was trying desperately to rewrite a fantasy novel and work on a proposal. I even thought about returning the substantial retainer from one of my clients and saying I just couldn’t meet my obligations.

Winter was winning.

By mid-November, I was already exhausted. Sleeping too much, living too grumpily, and totally unable to read or concentrate on anything without extreme effort. I’ve tried eating Vitamin D pills, but that never worked for me. So instead, with an understanding that a lot of people suffer this time of year from lack of light, I started sitting outside to work. The weather was still OK here in November. I found that the days I worked outside, in the sun, I could think more clearly. But just in case I thought it might be a fluke, well, there was the day when I was so busy at work with meetings that I didn’t get to go outside, and when I got home that night just the idea of heating up soup sounded exhausting.

I’d been putting off getting one of those “happy lamp” sunlamps for yonks. People in Alaska had them, but I always scoffed at them. It was like admitting you couldn’t cut it. I mean, it’s just sunshine! Your brain should be smarter than to get all wonked up because of lack of light.

But the evidence had been mounting for many, many years. And I was just too stubborn to see it. It wasn’t until I was in danger of drowning in work, fearful and freaked out, that I finally did something.

The happy lamp at home in my office.

I was going to wait for my next freelancing check to get a proper lamp – to get the ones I wanted was a little pricey. But it turned out my parents asked what I wanted for Christmas about the same time I was having my seasonal-related meltdown. They happily bought me a nice big sunlamp for my office at home and a small sunlamp for my desk at the day job.

To say these lamps changed my life isn’t actually an overstatement at all. On the way to a Christmas shindig with my partner, he turned to me and said, “I’m really happy you got those lamps. You have so much more energy now. You’re so happy. You’re not asleep all the time. And you’re not so grumpy anymore.”

I went from staring over the looming cliff of deadlines, then – completely fearful and frozen, unable to act – to taking action and meeting them. In the process, I also ended up being a much more pleasant person to be around for my partner, which is always nice. Nobody wants to hang around with a listless asshole.

Traditionally, I’ve been able to tame my depression with regular exercise. It helps burn off all that stuff that makes me anxious and gives me a just enough happy hormones to carry on. But when the sun went down, it always got harder to exercise. I got sluggish. Making food and getting out of bed were nearly insurmountable tasks. And even when I did exercise this time of year, if just didn’t move me the way it does during the summer. It barely made a dent in my lethargy.

I admit I’m astonished that it took me 32 years to buy a fucking sunlamp, but then, I’ve always been suspicious of what I think of as “hippie” cures. It just seemed too easy. Maybe I just needed to take more Vitamin D? Maybe I should exercise more? Maybe I’m just depressed for emotional reasons and my life ACTUALLY sucks!

But in fact, I was depressed because my brain wasn’t getting something it needed. In my case, I’m lucky, and it was something simple like buying a couple of sunlamps (I had to get off the Pill many years ago because it was actually causing a similar sort of depression, which was even more greatly magnified during the winter. The time I thought most seriously about killing myself was during a particularly bleak Nov-December while I was on the Pill).

This is all to say that life is a lot better than it’s been any winter previously. I’m meeting my deadlines. I’m working very hard. I’m getting out of bed on time. And I’m writing fiction again in earnest (though I will be writing it even more earnestly once I clear off some of these outstanding obligations – my teaching job and one of my freelancing gigs are up at the end of February, which should help clear my plate).

I’m hoping that in the future, I’ll spend a lot fewer seasons mucking about lethargically in the long dark teatime of the soul. It’s not exactly the world’s most fun place to be. I like this sunny one better.

I had to go to the doctor yesterday, which is something I have to do often and have come to hate and resent more than is probably appropriate. I had not been to my endocrinologist for nearly a year and a half, which isn’t to say I haven’t been to the doctor in all that time. I’ve been in for two surgeries and some followups, and been to urgent care twice. Which is probably why I was avoiding my endocrinologist, whom I’m supposed to see every 90 days.

When you go to doctors this often and get interrogated about your habits and your health and then jabbed with needles, prodded by fingers and knocked about the feet and knees to test your reflexes to ensure you’re feet aren’t going to fall off, well, it gets to you. I get so angry walking into the reception room that I have to start cutting things away, disassociating myself from… well, myself, and pretend all of these invasive indignities are happening to somebody else.

I learned this trick with strong emotion early on. I feel things as intensely as anybody else, but in times of great stress, trauma, or emergency, freaking out and breaking down aren’t useful. Nor is screaming at people when you’re angry, because they tend to just tune out. Emotion is seen as a weakness in this culture, and when women do it it just reinforces stereotypes about hysteria. So I learned to cut away those parts of me that were angry or overwhelmed and just endure things like they were happening to someone else. It comes in handy during doctor visits now. I honestly don’t think I could endure them without this trick, because the alternative would be to burst into an angry tirade at my doctor and ask her what the fuck all these appointments are for.

We go over the same litany – do you exercise? Do you test your blood sugar? What vitamins do you take? What do you eat? And then there’s the same boring tests every damn time, the same height/weight (am I expected to SHRINK every three months?) tests, the blood pressure, the pulse, the thyroid test, the reflexes tests, the breathing tests, and then, of course, the blood test and finger pricking and blood drawing.

And when it’s all over, every three months, I hear something to the effect of, “Well, nothing’s wrong yet. I’ll see you in three months. “

Chronic conditions are huge downers, because it’s not like after five years post-cancer they declare you cancer free and you run off into the sunset saying, “Fuck you cancer!” and you can at least tell yourself at night that the chances of recurrence after a certain point are very slim. Instead, there’s this expectation that every day, I get closer to dying. That we’re just waiting until something goes wrong. It’s a disheartening way to live. It’s not like I go in every three months and we talk about new treatments and therapies, or advances in insulin pumps or cheaper testing strips or some other thing that will make my life better, faster, longer. No, it’s just “Well, nothing’s wrong yet.” And then I pay out a couple hundred bucks and leave with some prescriptions for daily medications that will cost several hundred more dollars each month (all of this *after* insurance). Even if I have a slightly higher than my usual A1c, it’s not like we have a chat about ways to fix that, because, yanno, if my blood sugar numbers have been higher than usual, I pretty much know exactly why. It’s generally not some mysterious thing, it just means life won during those particular three months. Some days my struggle is easier than others. The last year of craziness meant something had to slip, and my numbers certainly did.

So if I know what I’m supposed to do, and nothing’s ever going to get better, what’s the fucking point of this? Why am I spending hundreds of dollars for someone to tell me I’m still sick? The “best” outcome of any visit is just to hear that “nothing’s wrong yet.” Catching things that are wrong early is great, but do I really need to come in every 90 days for that?

The indignities you put up with as a constant patient are exhausting. You start to feel like a thing, a slab of meat. And then people have to treat you like you’re stupid. During this particular appointment, there wasn’t even any small talk. It was all business. It was kind of exhausting, and it felt so pointless that I was angry for hours afterward. “Do you test your blood sugar?” she asks me, and I nearly lost my shit at that. “WHY NO I JUST SPEND HUNDREDS OF DOLLARS ON TESTING STRIPS BECAUSE I’M BUILDING HOUSES FROM THEM.” I mean, what kind of stupid thing is that to ask somebody with an immune disorder like mine where not taking synthetic insulin for more than 48 hours results in death? I mean, come on. Seriously?

And yes, before folks ask, I have the best endocrinologist in the area, one who isn’t taking any more new patients, and who I know I’m lucky to have because she’s so thorough. This is the best of the bunch. It’s just the way it fucking is. And you know, it gets to me sometimes, how you start to just have to tune out from the whole process, because it’s so exhausting and humiliating. It reminds me of my defective body, the one I learned to love after so many years of being told by the media that I was a useless person because I wasn’t femmy eye candy. I learned how to revel in my body’s strength and power, and to be put in a position where I’m seen as defective again is just aggravating. How do you combat perceptions that you’re defective meat when you know it’s true? When you know that a hundred years ago, you’d be dead, and you’re only hanging onto life through constant monitoring and multiple daily shots of a synthetic hormone that your body no longer makes?

My illness is largely invisible, and most people don’t realize how bad it is, and how seriously I rely on synthetic insulin to live. I appreciate a lot of that invisibility, and maybe that’s the issue. Because when I go into the doctor, I get treated like a sick person. In real life, I get treated like a healthy person who can hit things hard. That’s nice.

But on the slab, I’m just another defective body. Another piece of meat.

Some folks might know that I’m a Jillian Michaels fan. I mean, how can you not love somebody who kicks people’s asses all day, screams at them to suck it up, and then provides a thoughtful psych evaluation on them after she’s beaten them raw?

I was working out six or seven weeks ago and listening to one of her free podcasts, and she said something, only half-joking, like “If everybody would just do everything I tell them to do, they’d have no problems.”

And I thought… well, fuck it. I’m just going to do whatever the fuck Jillian tells me to do, because nothing else is working.

Physically, I’ve had a rough couple of years, mostly due to my extended-honeymoon-eating-fest, new day job that no longer requires me to bike to work, and some surgeries that left me down for the count.

Low-carb alone wasn’t doing it for me anymore. I was too addicted to high calorie items like nuts, cheese, and whipping cream, and when you’re eating a dessert every night that’s 1200 calories (what? It’s whipped cream mouse! Low carb! DELICIOUS! Yeah, didn’t figure out that calorie amount until I actually started… counting calories), no amount of working out (unless you’re clocking in three hours or more) is going to be able to help you.

The working out, I already had down. So I just made a commitment to getting in 60-90 minutes a day and logging it to make me accountable for it. So instead of 20 minutes here, 20 minutes there, I was committed to daily strength and cardio work.

The biggest challenge – and one I have fought against doing my entire life – was calorie counting. One of the reasons I’m a fan of Jillian is that she’s less of a bullshit fad dieter than most gurus. It’s all pretty simple. Burn more than you consume. Work out this much, but not more than this much. Eat this much, but not less than this much. Balance. I like balance.

I’d always known the calories in/calories out thing before, but I just didn’t buy it. See, just like calculating how much insulin I take based on the number of carbs I eat and my current blood sugar number, weight loss is supposed to have… well, not an exact formula, but a general formula that’s calories in, calories out. Balancing my blood sugar, though, taught me that trying to use that math to precisely predict what my body was doing was hopeless. However, if I came to it with the expectation that I was going to be getting an approximation of what was really happening instead of an exact number-by-number results, I’d feel better.

3500 calories might equal a pound, but just because you burn 3500 calories doesn’t mean you will burn a pound. It makes it more likely, sure, but saying “FUCK YOU I BURNED FOUR POUNDS AND ONLY LOST TWO THIS IS BULLSHIT” becomes more likely when you think of it that literally. That was the problem I always had with doing it. I watched people starve themselves on 800 calories a day and plateau, then go on huge binges, then gain back more than they lost. The body doesn’t like trickery. It will fuck you right back – the t1 diabetes has taught me that. Most mornings, my little formula of 1 unit insulin for every 15 carbs ingested might work. Others… I might be shaky and sucking down juice at 8am. No discernable reason (oh, I’m sure there’s a reason, but we don’t understand the individual vagaries of bodies enough to calculate all of the relevant variables. We can only go by the most obvious ones).

Instead of expecting precise miracles, then, I expected approximations. I calculated my BMR – basic metabolic rate. It said that on an average day, a person of my height and weight burns about 1900 calories. So, ok, that’s a starting point. My goal, then, was to cumulatively eat and/or burn enough calories that I was getting less than that each day.

But there were two important tricks here that I never did before on my other eating regimes. Only one of them is totally Jillian-approved.

First, I’m not allowed to go below 1400 calories. My goal is 1500. Crazy people may go as low as 1200 (::shudder:: ) but anything less than that and you’re well into starvation mode. That’s the point where not only are you hungry all the time, but your body kicks all the shit into gear that halts weight loss. We’re not meant to starve. We’re meant to hang onto fat. And I have a body that is very efficient at doing just that. I suspect it does it with even greater efficiency than most people. That’s one of the big reasons I avoided low-calories diets. I was also prone to bingeing. If I went hungry, bad things happened.

So there was one more thing I did here to fool my efficient body into easing back to my maintenance weight. I added in a meal one day a week where I was allowed to eat 1,000-2,500 calories more than my 1500 goal. So one day a week I’m eating anywhere from 2,500 to 4,000 calories that day. Jillian would not approve of this level of consumption (she’d recommend a day where you’re eating maybe 300-500 calories more), but it works very well for me.

Some of the changes were easy, like switching to non-fat lattes and reduced fat cheese and making a greek yogurt mousse instead of one made entirely of whipping cream. Others, like switching from Crystal Light and Coke Zero to water, and throwing out all my “snack” cheeses, were a lot harder. Worst of all, though, was getting used to cooking with cooking spray or 1tbs of olive oil instead of huge amounts of butter and olive oil… and bacon. We ate that stuff like liquid candy (WHAT?? IT’S LOW CARB!!). Also off-limits were the three-kinds-of-cheese-plus-bacon-plus-roast-beef wraps I liked to get from the cafeteria at the day job for lunch. Now it’s Chipotle, generally, with my usual carnitas fajita bowl (no rice, no beans, no cheese, plus guac) for 505 calories a pop.

At the end of the day, doing the one thing I didn’t want to do finally worked, and I dropped 20 lbs and can now fit comfortably back into 80% of my wardrobe.

But short-term drops aren’t really what I’m looking for. I’m looking for a way to not let this happen again. I’ve spent my whole life vacillating between 185-250lbs, and you know… I’m tired. I’m tired of having four sizes of clothes in my closet. I’m tired of thinking about it. I’m tired of dealing with it. I just want to find a weight and stick with it. Before I met J., I’d managed to maintain a very nice weight for myself for nearly two years. It was workable and relatively easy. I still got to eat pizza occasionally and I worked out regularly. But when Life Things happen, I inevitably get out of my routine, and things go sour.

So I’m turning to Jillian’s advice for that part of it, too, because, let’s face it – I just have no idea how to maintain a single weight for more than two years. As soon as the wacky Life Thing happens, it throws me out of whack, and there I am, with a closet full of clothes that are either too big or too small for me again. The other problem with calorie counting is that, you know, it’s not some fad diet thing. It’s something you have to do forever. If I want to stop fighting my body, I need to track my calories in vs. calories out every day, and ensure that, on average, I’m not eating more than I burn in a single day, without going below my 1500 base (or, when I get to maintenance again, my 1700). That’s the only way to manage it.

Ideally, of course, I’d just get to the point where I don’ t need to track this stuff anymore. I’d get so good at calorie counting and automatically knowing about how much of X type of exercise burned so many calories that I could just keep it all in my head. But I don’t trust myself to do that. It’s basically how we all do it now, and for me, as for most folks in the U.S., my guesstimate is so laughably wrong it’s… yes, laughable. Also, wrong.

So, I went against all my principles and started calorie counting and exercise logging, which is a lot less painful these day because of apps like MyFitnessPal, which keep me accountable. And this is where I’m at after nine weeks or so. Back down to a reasonable weight where I look slightly less like a mushroom, and another ten weeks or so from maintenance weight. I also feel like I’m in a better place for additional physical activity, because honestly, one of the other reasons I made the switch is because it was getting harder to move around all that extra weight when I was exercising. I felt physically weaker because my body was being asked to lug around more.

There is no particular point to any of this, of course. On my deathbed I won’t be all like, “Thank god I started counting calories!” or “If only I had lived my life at a size 6!” In fact, I rather like myself as I am. But there are some cold, hard realities I have to face when living in a world that tells me that a 2,500 calorie burger-and-fry combo is a normal meal, and sitting at a desk all day is a normal way for a human being to spend 9 hours. None of these things is a reasonable expectation, and to counteract them, sometimes you have to do things that may, on the face of it, seem unreasonable.

When you have a chronic illness like mine and you go to the doctor – any kind of doctor, really – you inevitably get The Lecture.

I am a type 1 diabetic. This is an immune disorder that hit me 5 years ago when I was 26. Basically, it’s triggered by some kind of event that convinces your white blood cells that the cells in your body that produce insulin are now Evil and must be eaten. Over time, your body ends up eating all of them, so you no longer process sugar anymore. Eventually, your body starves to death, because the blood cells no longer receive sugar (food). Most people who get it are kids. It’s rare to get it after your early 20’s, but it happens. And, importantly it is NOT the one generally linked to high carb diets and lack of exercise – you know, the one that’s ALWAYS in the news and so everybody thinks they know about (people are just as woefully ignorant about that one, yet I still find myself enraged when they mistake me for a type 2 and assume I will just “get better” someday)

In fact, I make no insulin. Not a lick of it. I have none. Give me 24 hours without a shot of synthetic insulin, and I’ll die. And unless somebody figures out how to reprogram my white blood cells to not attack my insulin-producing cells, I will never get better. No amount of diet or exercise will ever “cure” me.

Them’s are the bald facts. It sucks. It’s unfortunate.

What this means is that no matter how many miles I run, pounds I lose, or how much medication I take, I still won’t produce any insulin. I will still not get any better.

Got that? OK?

It is also a chronic condition. That means that it will eventually wear me down and kill me, because even if you’re living on eggs and cheese, your blood sugar is never going to be 100% “normal”. Oh, you can get it pretty close if you test about 10 times a day and never, ever, ever deviate from an eggs-and-vegetables diet, but any amount of strong exertion will send you low, and one mistimed or incorrect dosage of insulin could send you low or allow you to get too high, and when your blood sugar gets too high, it slowly starves and damages all your nerves and organs.

A normal person’s blood sugar is about 80. Your body’s always going to regulate your system back to 80, unless there’s something hosed up. When I was wheeled into the hospital five years ago, passed out and vomiting, hallucinating about little black dogs and how I should be doing my taxes in May, my blood sugar was up over 800. For nearly a year beforehand, nobody knew what was wrong with me. I mean, after all, I was an otherwise healthy young adult who ate right and exercised! Surely all the weight loss and exhaustion and infections and blurred vision and urinating and thirst and extreme hunger were just due to stress! (my non-diagnosis was just the first step in my extreme distrust of doctors)

Anyway, after 20-30 years or so of irregular sugar numbers, your body just starts to fail.

So…. yay!

But what’s often most aggravating about chronic illness (really, any chronic illness, let’s be honest) is that nobody fucking understands how it works. And especially not how it works for me.

BUT THEY ALL WANT TO TELL ME HOW IT WORKS ANYWAY.

I am so often confused with a type 2 – and, worse, an uneducated type 2 – that I try very hard never to use the word “diabetes.” It inevitably leads to lectures. As if I don’t know that vacillating sugar numbers are bad for me. Like I don’t know my feet could get chopped off or I could go blind due to overly high sugar numbers. Like I don’t stick to a stupidly low carb regime and exercise routine to mitigate these effects as best I can.

When my eye doctor asked me yesterday what my lowest low and highest highs were ever (no, she is not a new doctor. I have been there 3 times. And I always get THE LECTURE), I told her I’d been anywhere from 22 (after miscalculating the carbs in a croissant in Spain – I’m more insulin resistant in the morning [like most people], but my internal clock was still on evening, so when I dosed myself the way I would in the a.m. for this carb count, it was too much. I saw black spots and nearly passed out) to 435 (that was an unfortunate night in which my 2 a.m. sugar check alarm didn’t go off, so I missed a correction, which can be dangerous after eating pizza – this is one food I allow myself very rarely).

Are these numbers generally what I’m at ALL THE TIME? Of course not. My lowest lows are usually in the 50s and my highest highs in the 230s. On average, I’m clocking in at about 130. And that’s with regular (planned) exercise, low carb living 6 days a week, and testing my blood sugar 5-7 times a day.

But my eye doctor was shocked (shocked!) that my sugars vacillated between lows and highs like that (ever!), and decided to give me the usual lecture about how eventually I would go blind and have my feet chopped off if I didn’t control my blood sugar, and even though my eyes looked fine, you know, diabetes is a chronic illness and EVENTUALLY YOU WILL DIE HORRIBLY.

Oh, she said it much more nicely than that, with a very chipper smile on her face. And I just nodded my head sagely like it was the first I’d ever head of such amazing things and she knew what the fuck she was talking about. Then I proceeded to lie to her about my numbers the rest of the session.

I wanted to see her work out her diet and exercise and insulin calculations for two full days, let alone five full years, before she started telling me how crazy it was to have a 242 number at 2 a.m. after eating nothing but green beans, chicken, and sugar-free whipped cream mousse for dinner (hint: all the fat in the dairy makes it slow to process the carbs both in the dairy and the rest of your meal. So you may go to bed with a number of 90 and four hours later, ta-da! You’re at 240. The same thing happens with pizza, which means that if you want to eat a lot of it, you have to test your blood sugar and dose yourself with insulin every 2-3 hours or so for about 10 hours if you don’t want to hit that 430 number. Yeah, eating is tons of fun!). Yes, I have learned everything I have about how I react to carbs, certain foods, different types of exercise, and how the time of day affects my insulin doses through very hard, frustrating, scream-worthy, world-raging trial and error.

BUT OBVIOUSLY EVERYONE ELSE IN THE UNIVERSE KNOWS MORE THAN I DO ABOUT HOW TO MANGE MY ILLNESS.

I had surgery earlier this year, and the surgeon insisted I call my endocrinologist for “special instructions” about how to manage my blood sugar before surgury. She gave me strict instructions not to take ANY Novolog insulin that morning, and to take half my dose of Lantus (my 24 hour basal insulin). I knew she was full of shit. When I get up in the morning and start moving around, my blood sugar can jump anywhere from 60-80 points in an hour. It just… does. Which is why I generally take a half dose of Novolog at 6:30 a.m. on weekends to correct for this spike (even if I’m not going to eat until 9am. On weekdays, I just dose immediately upon waking for breakfast, planning for a breakfast and a.m. workout routine which is always exactly enough insulin to cover 10 carbs). But, trying to be a good little patient, I followed her instructions, and sure enough, come surgery time, my blood sugar was at 160 and then 180, and they were watching it intently, because if it gets above 250 THEY DO NOT OPERATE. So I was in a holding pattern for another 30 minutes to ensure that my sugar was holding steady and not continuing to go up.

Needless to say, that’s the last time I contact my doctor before a surgery. I already knew exactly how my body would react.

But anyway, ignorance aside(I know! You’d think that was the WORST PART!), here’s what really fucking pisses me off about going to the doctor (and when you have a chronic illness like mine, you’re expected to go to the doctor at least 5-6 times a year – 4 times for your endocrinologist, once for the eye doctor, and once for the podiatrist. This is so you can get MAXIMUM lecture time). What really pisses me off is people telling me how horribly I’m going to die. I’m tired of hearing about blindness, and kidney failure, and congestive heart failure and cataracts, and nerve damage, and amputation, and all the fifty bazillion things that are MOST ASSUREDLY GOING TO HAPPEN TO ME EVENTUALLY.

It’s like, you know what? What the fucking point is there going to the doctor if you’re just going to DIE HORRIBLY ANYWAY? And I swear to fucking hell, if I have to have one more useless appointment where it’s like, “Well, your A1c is fine, but it could always be better! You know, so you can put off having your feet amputated another year or two!” or “Well, there’s no sign of nerve damage… yet!” I think I will fucking punch something.

What the fuck is the point of this? Why am I spending my money to hear all about how I’m “not dead horribly… yet!” And “Yep, still got a chronic illness!”

I am never going to get any better. It’s never going to go away. I’m never going to be able to “get off” my drugs if I want to survive to tell of it.

It will not get better.

So why the fuck am I paying people to tell me how horribly I’m going to die so they can illustrate that they once read an article about how much it sucks to be a diabetic?

You know, if I was a type 2, there would at least be SOME KIND OF CHANCE that I could possibly wean myself off my meds after aggressive lifestyle changes as prescribed by my doctor, but as a type 1, THINGS ARE JUST GOING TO GET WORSE. And yes, thank you, doctor, I KNOW THEY ARE JUST GOING TO GET WORSE NO MATTER WHAT I DO AND THAT IMPROVING MY SUGAR NUMBERS IS SIMPLY PUTTING OFF THE INEVITABLE. It’s just a matter of how fast they get worse.

I am so fucking sick of paying people to tell me what I already know.

Sometimes I feel like they are giving me these lectures every time because, to them, it justifies me coming in. I mean, what else are we going to talk about? “Yep, things look fine!” is just not going to cut it. They must prove their usefulness. So it becomes, “Yep, things look just fine… but EVENTUALLY HERE ARE ALL THE HORRIBLE THINGS THAT COULD HAPPEN.”

Thank you, doctor. I had no idea!

Afterall, I am just an ignorant little bauble head. I never even read a book! Let alone wrote one!

It was really, really hard to stop listening to what doctors told me. You see somebody in a white coat and you assume they know everything. It’s not true. In fact, 90% of them know less than you do about your own illness. There are some good ones, yes, and to be fair my current endocrinologist always tries to be helpful, and has been the best I’ve had for actual lifestyle suggestions (like switching from vials and syringes to pens – this was nice), but for the most part, people are just woefully ignorant, all of them operating on the same knee-jerk assumptions or six-year-old article they read about how you should eat a balanced diet full of carbs if you want to control your blood sugar.

Half our cauliflowers appear to have been eaten by some kind of fungus, but these two turned out lovely, and we’ll be turning them into a fine cauliflower mash tomorrow.

And here’s what our garden currently look like, after harvesting some peas, a tomato, two cauliflowers, and two broccoli (including harvest of broccoli florets after initial head harvest):

I’ve been growing more keenly aware of where my food comes from (and what it’s actually made out of) the last couple of years. I grew up eating fast food. My parents both worked at a fast food company for 25 years. It was just… what you ate. It never occurred to me that you should eat any differently. I didn’t spend much time in the produce aisle until I was 18 and interested in dropping some weight I’d put on while on the pill. Switching to fruits, vegetables, and protein meant dropping 60 lbs in about 6-8 months. It felt almost effortless.

I’ve read all the books – like Fast Food Nation, The Omnivore’s Dilemma, In Defense of Food – and watched all the shows, like King Corn, Supersize Me, and Food, Inc.I know how we got here. And I know why.

These days, I work hard to eat well.

And, of course, that’s just it – I have to work hard to eat well. Folks who haven’t tried it really don’t know just how tough it is. Fast food, prepared food, soda, crackers, canned soup, frozen meals… these are revolutionary, time saving victuals that make it possible to feed a tremendous number of people on a very small amount of land with 80% of the base made of up just one versatile commodity crop – corn.

And it’s a blessing.

Yes, it’s killing us prematurely, because we have no defense against a double bacon cheeseburger. It sets off all of our primitive pleasure centers. Why not eat them all day?

Because, of course, you’ll die of malnutrition. But you’ll keep doing it, and doing it, like a rat with a way to self-administer cocaine. Giving up carbs is really hard to do. Even before I was sick, I’d get the shakes, and intense cravings. Then there are the visual cues, which are constant. As somebody in marketing and advertising, I know just how helpless we can be in the face of $5.99 single-topping pizza specials, particularly when you’re exhausted after work, haven’t eaten in six hours, and are faced with the prospect of an hour’s cooking time before food ingestion.

It’s amazing that we can feed ourselves so cheaply and easily in this country. Try growing a garden. Try losing half your cauliflower crop to fungus, like we did. “It’s a good thing we’re not relying on any of this to feed ourselves,” I told J. as I pulled out the cauliflower. Our little garden is just for fun. When we get a house with more land, we’ll likely be able to feed more of ourselves with it, but even a “for fun” garden is disappointing when you discover half your land was wasted on crops that don’t feed you.

As sympathetic as I am to the bullshit and poison that’s ended up in our food, I’m also very much aware of how things were before cheap food. Farming is not a fun life. Food doesn’t just roll out of the truck at the end of the day, full-formed. And after you grow it, you know… then you need to cook it. And that takes time. And planning.

On the one hand, the West is addicted to a diet that’s killing us. On the other hand, we spend less than 20% of our income on food and spend less than, what, 10 hours a week? preparing food (on average). As somebody who’s had to rebuild her entire conception of food from the ground up, I’m still sympathetic to the thinking behind where we are today.

There is another way to eat, I know, somewhere between industrialized, corn-fed fake food and fungus-ridden-today-we’re-eating-dirt-grown-your-own-grass food. There are farmer’s markets. Local agriculture. All that jazz. But that doesn’t take into account how people are going to eat during the winter, or those precious spring months when you’re growing what you’ll gorge on come end of summer. You end up eating a lot of turnips and jam and drinking a lot of vodka.

What”s on offer now is so damn good that’s it’s been a struggle to break the pizza-burgers-prepared-food-cycle. Taking that next step – the parsley-at-all-meals-turnips-all-winter step – is something I just don’t know that I can do if I want to continue to maintain a modern lifestyle.

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About Kameron

Kameron Hurley is the author of the essay collection The Geek Feminist Revolution, which contains the Hugo-Award winning essay “We Have Always Fought.” Hurley’s most recent novel, The Stars are Legion, a standalone space opera, was published in 2017. Her epic fantasy series, the Worldbreaker Saga, is comprised of the novels The Mirror Empire (2014), Empire Ascendant (2015), and The Broken Heavens (Spring, 2018). Additionally, her first series, The God’s War Trilogy, which includes the books God’s War,Infidel, and Rapture, is a science-fantasy noir series which earned her the Sydney J. Bounds Award for Best Newcomer and the Kitschy Award for Best Debut Novel. Hurley’s short fiction has appeared in Popular Science Magazine, Lightspeed Magazine, Year’s Best SF, The Lowest Heaven, and Meeting Infinity. She has also written for The Atlantic, Entertainment Weekly, LA Weekly, The Village Voice, Bitch Magazine, Huffington Post, and Locus Magazine.